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Old 12-28-2011, 12:47 PM   #1
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Posts: 585
Has anyone gone on disability?

I currently work as the manager of a restaurant/dairy store. It's pretty physical work, but I am a single mom and my insurance is carried through the company I work for.
I have thought of eventually applying for disability so I can soley focus on the cancer and spending time with my children etc. However, I sincerely doubt I will be able to pay the COBRA payment for my insurance. If anyone out there is on disability, was it difficult and how did it affect your life? Were you able to keep insurance, or did you get Medicaid? And if you did, were you able to get the chemotherapies you needed on Medicaid? Lots of questions, I know. Im new to this all, so I apologize up front.
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Old 12-28-2011, 11:00 PM   #2
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Posts: 151
Re: Has anyone gone on disability?

i had to sign up for disability before i could apply for retirement. I think it is because i worked fro the federal government but not sure. it took 6 months before i got a check. i was approved the first time. no denials. not sure about retirememt at your company. I did a medical retirement nad my retirement pays for my medical coverage. I may not be much help in your situation but i did apply and recieve disability. if you have no other insureance, i am sure there is something available to you on disability.
I was so fortunate that I purchased an AFLAC cancer policy just 6 months before i was diagnosed. that payment allowed me to be off work and no pay status but get the aflac check paid my bills, bought food etc. I hope the best for you. you can call your local social security office and go see a counselor to
have your questions answered.
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.

"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
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Old 12-29-2011, 01:08 PM   #3
karen z
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Posts: 1,477
Re: Has anyone gone on disability?

At the time of my diagnosis (2005) I had a LT disability plan though my university. At that time, I did not have a short term disability plan since I figured any accrued available sick time benefits would get me though the first three months, until the LT plan kicked in. In my case, my university's HR dept. was a huge help. I took off during chemo and started back to work during radiation (now wish I hadn't gone back until after radiation was done as well). Given my situation and the help I got at the university, things went very smoothly for me at the time.
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Old 12-30-2011, 07:32 AM   #4
Lori R
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Location: Evergreen, Colorado
Posts: 454
Re: Has anyone gone on disability?

While I don't have a lot of answers, I wanted to let you know that there are other Stage IV women on the site who are in a similar situation. My husband works for a small company with limited benefits, so I carry my insurance and my teenage daughter's.
I was so concerned about the uncertainty of medical coverage, I've decided to continue to work. Well 4 1/2 years later, I am still here and my insurance has paid for some non-standard treatments.

I wish I could offer more first hand knowledge of Medicare/Medicaid. Is establishing a meeting with someone a possibility?

Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 12-31-2011, 12:41 AM   #5
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Posts: 585
Re: Has anyone gone on disability?

Thanks so much for the input everyone. My doctor highly recommends I keep working for now. He says I need a reason to get out of bed and keep moving and keep going, and this will help me. Im just going to let it ride for a bit before I make a decision.
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Old 12-31-2011, 05:06 PM   #6
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Posts: 562
Re: Has anyone gone on disability?

This is something I'm struggling with. I've been off since October 3rd and my job protection is going to run out. I don't want to give my job up but I work in a school and the environment probably isn't safe for a Stage IV woman. I love my job though and it's true, it's much better to have something to do than sit at home and dwell.

I suppose if I'm not healthy enough to go back by February the decision will be made for me. I will get $800 a month in disability which is not going to help much. I have my life insurance through my work, and it will run out two years after I am done working, so I'd like to time it so I die within two years of stopping work. But, I'm not sure how to figure that yet!

08/17/09 Dx'd.
Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS
HER2+ ER+/PR- Grade 3, Node Negative

10/20/2009: Right mastectomy, reconstruction with TE
12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy
03/31/2010: Finished chemo
05/01/2010: Began tamoxifen, the worst drug ever
11/18/2010: Reconstruction completed
12/02/2010: Finished herceptin
05/21/2011: Liver Mets. Quit Tamoxifen
06/22/2011: Navelbine/Zometa/Herceptin
10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure!
11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years"
03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa
10/10/2012: Progression continues, started Halaven, along with herceptin and zometa.
01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa
03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta.
04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success!
05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo.
06/07/2013: Fiducial placement for SBRT
07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone
07/25/2013: SBRT (gamma knife) begins
08/01/2013: SBRT completed
08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa
06/18/2014: ***** NED!!!!***** continuing with Perjeta, Herceptin, Zometa
01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly.
11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted.

5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean.

Iím beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now Iím 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.
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Old 01-02-2012, 12:36 AM   #7
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Posts: 585
Re: Has anyone gone on disability?

I know how hard a decision it is. I guess that going on disability and staying home is kind of an admission of illness of some sort..not that we don't know we are ill. Its just like...Im too ill to work and be normal. Difficult decision to make. And of course, being poverty level does not sounds like much fun to me. lol! Im going to do my best to keep working through the Taxotere/carboplatin. It is only six treatments/18 weeks, and who knows, maybe with the herceptin I will get a good year or two without major treatment. I also know it could go the other way..and I could need more chemo right away, in which case i may decide to take the disability and make the best of it.
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Old 01-02-2012, 01:42 AM   #8
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Location: San Diego, California
Posts: 16
Re: Has anyone gone on disability?

I am currently on disability and have been since 9/2009. It can be a difficult decision but when you are not able to work, it is a wonderful option. I began the process online in September, 2009 and then had a mastectomy which delayed the completion of the paperwork and approval. I just recently went on Medi-Medi or Medicare-Medical and that was a bit scary. If you need any info, I can offer what I know.
I understand the reason to get out of bed, as sometimes it seems I am waiting for my time to be up, but, I try to take it one day at a time, even on the bad days. My reason to get up is that I take care of my Mom who will be 92 in April and has severe osteoporosis.
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Old 01-04-2012, 06:58 AM   #9
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Location: Morris, IL
Posts: 3,507
Re: Has anyone gone on disability?

I have been on disability since 2003. I worked as a nurse and that was truly not condusive while on chemo and stage IV! I hated giving up my work, I loved it, but over the years I have concentrated on living and my family....it is a great tradeoff! I have medicare, part A, and my husbands insurance, and although the loss of income was a shock at first, I can honestly say I dont even think about it anymore...I truly have more with less!
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."

Hugs & Blessings
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 02-03-2012, 09:50 PM   #10
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Posts: 40
Re: Has anyone gone on disability?

I've been on LTD through my company for about a year, and they required me to apply for social security disability for myself and my two children, which I received quickly (they move quicker when it's a stage IV diagnosis. My doc recommended that if I was able, to take time to spend with my family when my mets were discovered. Luckily, I have good health insurance through my company, and they've taken care of the premiums, and I have secondary insurance through my husband's. Social security disability and LTD together pay me almost what I used to make in salary. My reason for getting up every morning is spending time with my kiddos, who are 5-1/2 and almost 3!
12/27/10 - IDC, rt breast (approx. 15 cm), lymph nodes, age 36. 1/7/11 - stage 4 IDC, extensive liver mets, Bone mets (spine, sacrum, rib, sternum, upper arm), ER-/PR-, HER2+++; 1/12/11 - port, 1/17/11- startweekly Taxol/Herceptin, monthly Zometa
3/8/11- decrease in all tumors, bones healing. 3/11- 3 wks on/1 off Taxol/Herceptin, +Zometa
6/6/11 - decrease in all tumors, healing bones, 2-4 new liver lesions. 3 wks on/1 wk off Taxol/Carbo/Herceptin, +Zometa
7/29/11 - liver progression, others stable; 8/11-drop taxol/carbo, start Navelbine
12/11 - liver progression; begin AC, drop Herceptin;
1/12 - liver enzymes normal, 2/6 results show regression in liver, stable others, but 9 tiny brain mets (largest 7 mm). Begin 13 WBRs 2/6; 2/29-start Tykerb, 3/7, start Xeloda
5/2012- liver progression and regression, liver biopsy confirms HER2+++. drop Xeloda, start Herceptin, Tykerb, Zometa.
5/2012- brain MRI shows all lesions gone except 1, 2mm shrinking!
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Old 02-04-2012, 12:36 AM   #11
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Posts: 585
Re: Has anyone gone on disability?

Sheila and KM, I sure think it is wonderful that you are able to do that, and at first I thought that was what I wanted to do too. Then of course, the reality of my situation set in. I don't have a husband with an income who can carry insurance on me. The COBRA on my insurance would be extremely expensive, and only last a year, I believe. So basically I would be getting minimal income and state insurance for the first two years (MediCaid). So, Im pretty much scared to death of losing my insurance, wanting or needing treatments that state won't cover. I see the bills for my chemotherapy, and they aren't pretty! lol As much as I would like to do the quality time with my kids (they are teenagers), just being a housewife, cooking up some yummy meals, maybe grow a garden, take some classes at college, etc...I think that for me it is going to have to wait for a while. This disease is so awful, because you honestly don't know what kind of shape you are going to be in a few months down the road. Ideally I would like to say I will work this year, and then maybe be done with it, but I don't know if I will be able. Everything is always so unpredictable. Im hanging in there, though, and
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
April 2015 remain NED
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Old 02-10-2012, 10:49 AM   #12
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Posts: 403
Re: Has anyone gone on disability?

Hi KsGaL, i hope things work out for you. I worked full time during the whole treatment but i did take 5 weeks off after the surgery. It is hard to predict how you react to the chemo. But my oncologist also recommended that if i could, i should go to work. Actually working full time helped me to feel better about myself as i got to get dressed, wear make up and socialize with people. I do office work so physically i could handle it. I had no choice but to work anyway. I am a single mom and purchased a house 2 months before my dx. How fast life changes !! CA is expensive
1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy
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Old 02-12-2012, 07:34 AM   #13
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Join Date: Feb 2012
Location: Miramar, FL
Posts: 9
Re: Has anyone gone on disability?

Hi I am currently on short term disability and long term disability. On January 20th long term disability started per my company policy so I am getting both at this moment. short Term disability will end on March 20th if I am still out at that time. I stopped working on Sep 20th. I started chemo in July 2011 and I thought I could work through it all but When I went to work on the 19th I realized I just couldnt do it anymore. I am only stage IIB but had 6 chemo TCH, Herceptin every 3 weeks until July 2012, surgery Nov 30th, pneumonia and infection in hospital 12/13-15/2011 and radiation 6 weeks (next week will be the last). I was planning to return to work on March 1st but I have so much pain in my body. I am not sure I feel ready to return to work. I am also terrified of going back, is weird after working there for 21 years I just dont feel I have the energy anymore. I amtrying to make a decision of what to do next and Iamvery confused.
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